Chris Patton with his mother, Anne, says he finds inclusion through the Wayfaring Band and poetry readings (pre-COVID).
By Eliza Marie Somers
Isolation. Loneliness. Remoteness. These words people have used to describe what the majority of the world’s population has experienced during the coronavirus pandemic of 2020. These words also adequately define what people with intellectual disabilities often feel, sometimes every day, as they live life on the fringes of society when they are left out of community events.
“There are 200 million people in the world with intellectual disabilities. That is 2.6% of the world’s population. The more we can do to include these folks, the better we are as a society,” said Gayann Brandenburg at the Community Counts! Community Life seminar for people with Intellectual and Developmental Disabilities (I/DD). The series, created by CTAT, LLC and funded by Denver Human Services with the City and County of Denver, encourages inclusion for people with I/DD.
“A lot of people haven’t had relationships with persons with I/DD, and more than anything else they are afraid of saying something stupid,” Brandenburg explained.
Thus, leading to ignoring people with I/DD. “People with disabilities are different, but it doesn’t mean we don’t have feelings,” said Jocelyn Roy, a panel participant.
Jocelyn Roy enjoys being part of the community. "It feels good to be needed. I like sharing who I am.”
“Go out and meet people in the I/DD community,” panelist Dennis Carbrey said. “Introduce yourself.”
However, panelist Alan Staude said be mindful when meeting people with I/DD.
“When you are trying to introduce yourself to someone with I/DD think about what you want to say. Think about how you want to say it. And what could offend them or what can be used as offensive words,” Staude said. “Don’t go headfirst. Be positive in everything.
“I’ve seen too many times, the first time meeting someone with I/DD that they had lost all hopes of trying to get to know that person. It can take months to make another first impression. … You have lost a chance to be my friend right off the bat.”
Brandenburg cited Maslow’s hierarchy of needs, and the importance of acknowledging the whole person and to create space for emotional and mental wellbeing by creating space for them to fully participate in our community’s activities and social events. A lesson also can be learned from Dr. Bill Thomas, who co-founded The Eden Alternative, after he realized loneliness, boredom and helplessness were ubiquitous in nursing homes.
In the early days of Thomas’ medical career, he asked a patient how she was doing. To his surprise, the woman pulled Thomas close and said, “Doctor, I’m so lonely.” Thomas was so taken aback by the response he developed alternatives for assisted-living facilities to help improve people’s lives and not just taking care of their basic needs.
Gayann Brandenburg says supporting people in expanding their social roles helps people become included in the community.
“When people have opportunities to belong, they build friendships. It increases their self-esteem, and helps them achieve their potential,” Brandenburg said. “Feeling isolated leads to depression. How can we make a meaningful impact, and not just brush people aside, be it the elderly or individuals with I/DD?
“If you want people to belong, you have to include them, and not let them feel like a bystander. Look for opportunities for people to have valued social roles such as employee, volunteer, friend, board member, mentor.” Brandenburg continued. “All of us are a spoke in the wheel of humanity, and we all must contribute. If a spoke in the wheel is broken, the wheel will collapse. When all of us are included and involved, we are like a well-oiled machine.”
For example, if you are planning a birthday party for a person with I/DD, include them in planning the party. And people with I/DD may benefit from or ask for support when making an effort to get involved, such as bringing doughnuts to work or sending out Christmas cards.
“It’s the idea of reciprocity,” Brandenburg said. “Participation is a learned skill, and we have to teach people with I/DD that skill.”
People with I/DD who are included in community events tend to be employed and have less health problems, Brandenburg said. And having a job contributes to mental well-being.
Dennis Carbrey enjoys working, which gives him a sense of belonging.
“I was tickled to death to hear I was going back to work,” said Dennis Carbrey, who was furloughed early during the pandemic. “It was hard to find things that interested me when I wasn’t working.”
Erin Bargman especially feels the seclusion during the pandemic lockdown, and experiences inclusion when she is working at Pizzability and Brewability.
“It’s not a great time with COVID. I feel isolated. We have to wait it out. Work is a way out of the house,” Bargman said. “I like my routines. It’s frustrating spending time in my room. It upsets me. … And here we are!”
“Employment makes all the difference in the world,” Brandenburg explained. “It’s a safe place and the support of a job coach helps a new employee be successful.”
Joan Ulibarri works at a parish, and finds the time stimulating. “We have really good discussions. And I make friends at work. It’s been a really good place for me,” she said.
Chris Patton, who writes poetry and started his own T-shirt business, finds inclusion through his poetry, music and art.
“I loved swimming and playing basketball at a rec center,” Patton said. However, when a lifeguard yelled at him, Patton felt ostracized.
“He treated my needs terribly,” said Patton, who is autistic and uses a device to communicate. “He treated my mind as dumb. I’m a killer smart man.”
Patton’s mother, Anne, added that when Chris has to sit on the sideline it tears him up inside. “I’m lopsided in life,” Chris said. “And my lopsided life makes people uncomfortable.”
Volunteering is an excellent way to keep engaged in the community, and many on the panel find belonging when they are helping others.
Alan Staude says volunteering allowed him to see things from a different perspective.
“I helped the Volunteers of America with its lunchtime program, and also at a few churches,” Staude said. “It gets me out in the community to help my fellow man. And it helps me see from a different perspective. … The things we take for granted on a day-to-day basis.”
Roy helped out at the Ronald McDonald House, nursing homes and St. Joseph Hospital.
“I really like it,” she said of volunteering. “I helped at St. Joe’s putting makeup on patients when I was in high school. It was a good chance to meet all different kinds of people. I love being around people.”
Before the pandemic Roy enjoyed going to the mall and the movies to stay active in the community. “I like being part of a group,” she said. “It feels good to be needed. I like sharing who I am.”
Staude remains active with his friends via Zoom and “hanging out” with his virtual gaming community. “I’m being more in touch with my inner techie,” he said with a chuckle.
Being involved in community life also can be fraught with tension, too, if the intention is not authentic.
“I’ve been on both sides, where I have been treated really well and really badly,” Staude said. “And I can truly say that in the last eight or nine years I have not been treated badly or unfairly. I’m just glad and overall happy to be connected with the groups I am in right now.”
If we feel welcome and valued, we will all participate, Brandenburg said, and including all members of society only makes us a stronger and healthier community.
“How can we create an environment where all people have a sense of belonging?” asks Brandenburg. “Be welcoming, get to know people over time, play to everyone’s strengths so everyone has an opportunity to contribute.”
Here is the graphic recording – your visual summary – of the Community Access session:
Graphic Recording by Sue Fody (www.suefody.com)
Community Counts! is designed and implemented by CTAT, LLC through a contract awarded by Denver Human Services. Thanks to the generosity of the citizens of the City and County of Denver, Community Counts! fosters inclusion for and with our residents with intellectual and developmental disabilities.